Home again, home again…

Oh wait, I’ve done that already!  Well, now I need to do it again.  I’m just coming off *another* Tower stay.  Oh joy!  I went to my follow-up appointment that Wed. morning (the 3rd of July), and didn’t make it home until 5 days or so later.  Bummer.  What a way to spend the 4th of July holiday, huh?  No fireworks or cookouts or swimming or really anything fun for me this year.  Just a lot of sick, fighting, testing (of the medical variety), and much blah.  The one redeeming positive factor is that a good friend of the imaginary (internet) variety managed to get a cheap flight from MN and came to the Tower to advocate for me and then followed me home and got me all settled.  We’d only met IRL once before, despite knowing each other online for quite some time, but it was easy and fun and I am so thankful that she was able to get here and make me feel all loved.  ❤  She is leaving at o’dark hundred in the morning, back to her real life and family, and I’m going to miss the company.  The best part is that many of my other imaginary friends kicked in a few bucks here and a few bucks there to help her offset the cost of the plane ticket and rental car, and by the time they were finished?  All those $10 and $20 donations added up to enough that her costs were pretty much covered.  *That* is even more awesome, and I have been repeatedly humbled and amazed at the goodness that still exists in the world.  Sometimes.

In not so great news, this Tower stay was the worst stay I’ve ever had.  It was most certainly NOT a restful vacation as I ordered.  Pig fuckers.  I jest, but it was by far one of the worst hospital stays I’ve ever experienced and most certainly it was the most horrible time I’ve ever had with the Tower.  My doctors are freaking amazing, and I wouldn’t switch my pulmonologist for anything in the world at this point, but the rest of the staff there left quite a bit to be desired.  I am not sure how much I want to go into right now, as it’s approaching 1 a.m. and I’m ready for a couple of hours sleep before trying to see my friend off (ha, what are the odds I’m going to wake up…) so let me see if I can summarize a touch:

First day pretty good, met with docs, felt super important as my pulmo finished up clinic hours and came over and performed my second bronchoscopy in as many weeks himself.  After 5 on a holiday, the city was preparing for their big fireworks display.  I had the nurses and respiratory therapists tell me (repeatedly) that I should feel very special indeed, as they had several bronchs to do the following day anyway and it would have been no big deal to keep me not eating and drinking all night (I’d already not eaten all day because sick) and do mine with the rest of them.  The fact that he finished clinic hours and THEN came over and did it himself (I didn’t even get any students this time!) speaks volumes, and I feel like he’s doing everything right in terms of my care.  Slept a lot that night until pain meds wore off, and then was hurty and unable to get comfy until pulmos rounded the following morning and changed up my pain meds and got that under control.  And that is where the trouble began.

That day, day 2, my pain was well controlled and I was on a zillion antibiotics because they didn’t know what they were dealing with.  The trouble began when I observed my RN diverting (STEALING let’s call it what it is shall we) dilaudid right in front of me.  It was very sneaky, and requires a lengthy explanation/description, so I will forego that for now and just say that I am now 100% positive that’s what was going on.  I got my meds, she diverted an extra bottle.  At some point she also brought my percocet already out of the package, which is a no-no – they are supposed to open the blister pack in front of the patient so you can be sure you’re getting what you’re supposed to get.  Covers her ass and makes patients happy.  She brought mine in a ziploc baggie.  I didn’t question at the time, and didn’t really make much note of it until my pain was way out of control.  I’m on a lot of narcotics at home, so I tend to notice when a dose is missed.

Woke up on day 3 to a shower in my room – water just pouring down from the ceiling as if I were standing in a storm.  Dripping and running around/down the TV, the wall, splashing all over my bed, huge puddles on the floor.  It was a great way to start the day.  It wasn’t even shift change, so it was well before 7 a.m.  Luckily, they had an empty room next door that was simply missing a bed, so they managed to just wheel my bed and belongings from one room to the next.  I fault no one for this, it’s just one of those things that happens, and really would have just laughed it off if it weren’t just another thing on the pile of shit that was this stay.  In fact, I was asking people for umbrellas and telling the PCA that I wouldn’t’ be needing a shower that day since I’d already had one, and similar cracks.  It was funny.  Or I’m easily entertained.  Maybe both.

But then they moved me off that floor, which is good as that floor is the step-down unit that requires constant heart monitoring.  Moving floors meant that my HR had finally stabilized enough that I could get off the tethered monitor and put instead on a remote box so I could walk around and such and see what my heart did then.  Bad news! My nurse informed me that he was leaving at 3:00 p.m. – he dropped me on the new floor at 3:10 p.m.  I don’t think he ever gave report, or if he did, he gave it to someone who didn’t hear.  by 4:30 I was due for more pain meds, and hit my call light, and they responded to me as such, “How can I help you, Mr. Moore?”  Well, I am neither a mister nor a Moore, so this was a bit alarming.  Still, I laughed.  Until my PCA from *that* floor decided to come in without precautions… oh wait, need to back up.

I knew this was bound to get lengthy.

I tested positive for C. diff. on day 2, and as such was on contact precautions.  Meaning no one in my room without gowning up, and I had to have my own thermometer, BP cuff, pulse oximeter, etc., for monitoring because it’s quite contagious and not something you want to be spreading around the hospital.  So my PCA on the new floor waltzes right into my room without so much as a hint of a gown, and also toting the community vital sign monitoring equipment.  Which she intended to use on me.  And then take to the next patient.  *shudder*  I was luckily with it enough to tell her to go check my precautions situation before she entered, and she could not have been more apologetic and thankful.  *She* was in shock that she’d almost done that, but it was not her fault at all.  There should have been a notice on my door and gowns just outside, readily available.  Someone dropped th ball big time.

At any rate, it took forever from there to get the crappy nurse from hell (who happens to share a name with my mother so I will never forget it) who would not push dilaudid at all and told me how I did not seem to *need* such strong pain medications because I was smiling and smiling people are not in pain.  Nevermind that the only reason I was not in pain was more than likely due to the fact that I’d had dilaudid and percocet in rotation for the previous 24 hours or so.  I did eventually get my meds, but she went and got another nurse to push them (twice).  She was okay with the percocet, and I thought maybe it was an IV situation (like she wasn’t allowed to give IV meds or something?) but she hung my IV antibiotics so who knows.  What I do know is that I had a miserable time and had to fight with her for meds every single time, and I had her for two days straight.

I fought with more nurses about the pain situation, and made them call my doc for clarification and confirmation.  I guess one cannot have pain meds without a healthy dose of shame on the side.  As if I do not know that I am on strong narcotics.  I have said before and will say again, however many times it takes – when every single breath hurts, I honestly do not want to take the next one.  If I could simply stop breathing at that point, I most likely would.  It hurts *that* much.  And that is not the point to come and argue with me about whether or not you think my narcotic use is too much.  Especially if you are not my doctor.  And extra especially when I have FOUR doctors on my case who all agree (I had 2 pulmos, the gen med admitting doc, and an infectious disease doc this time).

There was so much more that went wrong, but all of that could have been managed with my pain under control.  I am such a happier person when it doesn’t hurt to breathe, imagine that.  I also tend to heal quicker, as I’m more willing to let a big ole cough come through (rather than stifle it down which is what I did for several days) or do the deep breathing that is required to get over this pneumonia yet also exceedingly painful without strong pain meds.  Yes, I realize people abuse them.  Were I med-seeking I should hope that I would choose something other than a lung disease to fake and I would probably have much better access.

Anyway, the aforementioned friend from MN (hi S!) helped me gather all my notes from this visit and compile them in a coherent document so that when my case manager comes tomorrow i can begin the Official Complaint process.  If every Tower visit were like this I would probably not even bother to go in, and that is not a good thing for my condition.  But I don’t have that amount of fight left in me any more, I just don’t.  Not even on a good day, let alone when I’m in the midst of pneumonia.

Oh, and by the way, my bronch grew something this time – mycoplasma pneumonia.  That’s good news, as it responds quite positively to azythromycin and so I am working on another 14-day course of that.  I feel so much more like myself this time around, and am pretty confident we got it this time.  I’m still without my little fellas (and missing them sooooo much!!) so I can be lazy and restful all week and hopefully do a much better job than I did last week.  No real plans other than a follow up with a gen med doc that I’ve not yet met on Friday.  Said doc works in the same practice as my former PCP who just left and new PCP that I haven’t seen yet.  Guess that was the doc who had appts available when I needed to be seen, so that’s who I’m seeing.  I’m not too worried about it, I will probably only see him/her this one time and don’t need anything other than a quick check and listen to make sure things are progressing as they should.

I’m still sure there’s so much more to the story, but that’s all you get for now.  You’re no doubt as tired of reading as I am of typing, so I’m off to rest for a while again.  Still kickin’.

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So I’m Home

Home from my Ivory Tower, back for another round of reality.  I am so exhausted.  I don’t think I can even describe in words the feeling of exhaustion that has been hounding me for far too long.  It’s hard to fight it, and it’s hard to know whether or not I even *should* try to fight it.  I planned on taking this week off from life, mostly, and sleeping as much as I needed and resting and just hanging in my a/c and enjoying the silence (since the boys went back to Chicago with their daddy).  That hasn’t really happened.  I had one day of sleep (and made the most of it!) but only one day this week has found me alone and resting.  The rest has been full of teenage daughters, my mom and her drama (ever present and ongoing) as well as as birthday, my eldest son and his (welcome but tiring) visit, and my middler, who really needs someone to pay attention to him constantly (thank goodness I was wise enough to have that child some brudders).  It hasn’t been a very restful week, to say the least.  Tomorrow I’d planned on more of the same, resting and sleeping and knitting, but my lovely daughter has decided that she’s coming to finish her tie dye projects, so maybe not.

On the bright side, this seems to be an acute infection and not a worsening of the fibrosis, according to the bronchoscopy.  I will know a little more after my follow-up appt. on Wed., but they said they compared to my last prior bronch from nearly two years ago and the amount and extent of fibrosis is mostly the same with only maybe slightly a little bit worsening.  There was, however, an area of acute inflammation on the right lung that they could not determine the origin or cause of, and that was/is causing all the right-sided pain as well as the increased shortness of breath and all that jazz.  They’re calling it pneumonia, as there was evidence of pneumonia in the left lung as well but apparently I didn’t notice that as much because the left side always hurts.  That is good news, as I was really worried with having felt soooooo bad and sooooooo tired and just… beat lately, that the disease process was really taking over.  It is reassuring to know that yes, something was taking over, but it’s not fibrosis – only inflammation – and still reversible in its current state.

So, for now I’m going to do my best to slow down for a bit and rest rest rest and just take my meds and drugs and lay around and knit in peace and quiet.  It’s not easy.  Well, it’s easy when I feel bad and it’s easy for a day or three after I feel okay.  Then it gets really old and I do not know quite how healthy people sit around and do nothing for extended periods of time.  It drives me insane, and I feel like I *must* go do something.  Knitting helps, as it helps to make me feel like I’ve produced something at least, but it’s not a total cure.  Likewise writing helps, and I can do that when I feel a bit down as well, but it’s not enough alone.

Hoping I can convince myself to take it easy for another couple of weeks, and then go get my boys back for a few weeks before I brace myself to deal with JF in Chicago for a bit.  If you see me on facebook doing cartwheels or something, remind me that I need to get back in bed.

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Why is everything so LOUD?

Welcome to my unsleeping life, edition eleventy million and three.  I don’t know whether it’s the steroids (likely), the brain that refuses to stop when it’s supposed to (also likely), the swollen legs and feet that are making me incredibly uncomfortable and therefore unlikely to drift off to sleepland, the cough that refuses to stop, or the notion that I should get up right this instant and fix xome bacon because my stomach is demanding it (see also: steroids).  Most likely some combination of all of the above is making me unable to sleep tonight, and it is super frustrating.  I don’t want another super frustrating night.  On the bright side, I’m in my own bed, and have my own drugs, which I can take on my very own schedule and do not have to wait for someone to come administer to me.  Plus, bacon.

I’m a tiny bit concerned that I may have left the confines of the hospital bed a tad too soon, honestly, but given the care I received the night before busting out?  I’m going to stick with the assumption that I made the best choice at that point even if I was not quite well enough to come home.  Actually, I think I was well enough to come home with some help in place, but I did not get that help in place and things have not really been lining up as neatly as I’d like them too, and people are not as cooperative as I”d hoped.  I hate it when that happens.  Mostly I’m speaking of the boys here, this stay was really rough on them.  I don’t really know why, as they are generally pretty accustomed to a few days here or there and understand and can suck it up even if they don’t like it when they know that I’ll be back within a matter of a few days.  This time, however, the 9 yo apparently cried himself to sleep two nights, and was texting me constantly from his ipod.  He never would say that anything actually happened, mind you, just that he was bored, or sad, or that he missed me.  😦

Likewise the little guy, now 6, was sending messages from *his* ipod to the tune of two or three per hour during all his waking hours, and his were equally sad and gloomy and full of “hurry up and come get us, Mommy, we miss you. :(” – which just breaks a Mommy’s heart when she’s stuck in a hospital room and really can’t come.  This hospital has a policy of no kids under 12 allowed on the floor, so they couldn’t even come visit.  It is, in fact, the only hospital I’ve been in (and I’ve been in a few!) that would not allow one’s own children to come visit.  There have been places and times that had policies where they had to wear masks, or could only stay 15 minutes, or various other safeguards, but I’ve not seen them banned completely before now.  At any rate, they missed me terribly and cried a lot and I don’t really know why this time.  Perhaps it was a combination of the holidays and post holiday let down combined with having been gone for much of December and so forth.  It was rough, anyway.

So typically, when I get discharged from the Tower, I give myself at least a day or two to settle in at home before I let them return.  This gives me a chance to catch up on all my sleep, shower, let my sister come and do up the laundry and throw away the spoiled foods, and make sure I’m restocked on easy things to feed them and all that good stuff before they get here.  And by day 2 at home, I’m usually ready.  This  time, however, they rather insisted that I pick them up on the way home from the hospital.  Since their big sis was the one coming to pick me up, it wasn’t like I could easily deceive them and snag some shower/rest time without them knowing.  They knew as soon as she left home to come get Mommy, and they were dressed and ready at the door, waiting for her to come back (with me, en route from hospital to home) and pick them up.  I did not have the heart to ask them to stay an extra day (although I did threaten to take them back immediately if they were not quite, perfect angels that night!)

On top of the two sad little fellas, I had a third boy who didn’t want to be left out of the fun.  My 12yo cried and cried to come along, and I had big sis stop and pick up pizza for dinner, so we all hauled off to my place for dinner.  No rest for the wicked, right?  I was trying to gently persuade the 12yo to go with his sister back to their dad’s house, and he was putting on the biggest guilt-trippin’, pouty faced, crocodile teared performance I’ve ever seen from someone over the age of five.  I do declare, you’d have thought I was selling the child on ebay.  Did not matter one iota how much both his sister and myself tried to explain to him that just the simple fact of his presence changes the dynamic in the house and that I really needed him to be with his dad/grandma so that I could get this stupid pneumonia out of my lungs and not need to return to the hospital.  A sick Mommy needs rest.  his response was always, “I’ll be quiet, you won’t even hear me!”  Which was really not the issue.  He’s a perfectly well-behaved child most of the time, but when he’s not here it is much, much easier for me to handle the younger two.  They play together nicely then, rather than the 9 and 12 yos playing together while the 6yo cries to me because his brudders won’t play with him.  (I may also point out, in case anyone reading does not know, that the 12yo and the younger 2 have a different dad, who lives nearby, and who 12yo lives with at least 50% of the time.)  He did finally go back with his sister, but only because I forced it and then he was guilt trippin the entire time and letting me know that he was Not Pleased about it and wanted to come back asap.

All of this is a rather long-winded way to say that I think I’m worse today than I was yesterday, and I hate that.  I’m sure that the antics of Hell Night set me back a little, because crying always makes me worse, and I did a ton of crying and a little yelling to boot.  My right eye was almost swollen shut yesterday morning, and I attributed it to the crying, but today I noticed a big ole red streak of blood across the white part of my eye, so I’m guessing I scratched it at some point during my little display.  I’ve had to remove my contact lenses and give my eye a break tonight.  The worst thing, I think, is this stupid cough.  It’s always there, but it’s exceptionally bad tonight.  Take cough syrup, wait for it to kick in, get relief, lay down, start coughing again.  Boo.  Usually helps if I sleep sitting up when that happens, but I’m gonna need to clean my recliner before that can happen, for reasons that I will not go into right now (hint: it begins with jerk and ends with face!)

Of course tomorrow is Friday and I’m coming up on the weekend again, but I think that I have enough antibiotics in my system and steroids in my medicine bag that I should be okay for the weekend.  My sats are holding steady, and my lungs sound pretty clear compared to my normal (that’s the steroids doing their thing) so my plan is just to hold steady and take it easy this weekend unless my sats tank or I start running a fever or something.  Tonight?  Well, I give up on tonight.  I’ll just watch some cheesy Netflix and knit up some socks.  Just not very complicated ones, because anything that requires thinking is going to be beyond my skill level tonight.

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